Myalgic Encephalomyelitis (ME) / Chronic Fatigue Syndrome (CFS) is a disease characterised by profound fatigue, sleep abnormalities, pain, and other symptoms that are made worse by exertion. On World ME Day we join with other agencies around to world to bring recognition to ME/CFS as a condition that is incredibly disabling.  However, in New Zealand, it is not recognised as a disability, and is not funded for extra support within the health system.  It is a serious, long-term illness that affects multiple systems within the body.  There is no cure and treatment is only via long-term management of the symptoms.  People living with ME/CFS are often on a scale of functionality, ranging from very severe (10%), who are often limited to their rooms/beds, to 70% being moderately affected, no longer able to work or be active within their communities, to 20% who can maintain part-time or even full-time employment. However, this also comes at a cost, which their lives revolve around working and resting.

In New Zealand approximately 25,000 live with ME/CFS and another 20,000 with long-term Long COVID.

People with ME/CFS are often referred to as the ‘missing’. Because they are often missing from work, the community and family events.   They are often having to manage their limited energy to very few events they can attend and even know that attending these will come at a cost for the few days following.  People often don’t understand how unwell people with ME/CFS are, because when you do see them they may not ‘look’ unwell. But what is hard to understand is the sacrifices they have had to make to be out of their homes to see you today.

May 12 honors the birthday of Florence Nightingale, founder of modern nursing. In 1860, she established the Nightingale Training School, despite being virtually bedridden with an illness resembling ME/CFS or fibromyalgia.